[Lipz1220]

Need a specialist in IgA lambda & hypogammaglobulinemia

by Lipz1220 on Thu Feb 26, 2015 9:19 pm

I am new to this site. I have had MGUS with hypo­gamma­globu­li­nemia for 6 years. I live in West Virginia and my oncologist is not at all a myeloma specialist. I have a 0.2 g/dL (2 g/L) M-spike, my free light chain ratios go up and down, my beta 2 microglobulin is at the highest normal.

I have been to several big name centers for work ups, but alas no definitive diagnosis. I gather that IgA lambda may progress to kidney disease. I have not had a heavy light chain test – I hope I'm right describing that – and no urine testing for many years.

I have severe bilateral carpal tunnel hands and have huge pain walking with lumbar disc disease. My IgG at one point was down to 222. I recently found that I test positive for a1 antitrypsin antibody and my level was below 88, which I read can cause the Congo red dye to not properly diagnose amyloidosis.

Help. I want to go to a major med center where I am taken seriously. My local oncologist said I was crazy. And, if I died, it would be suicide. I am afraid, and have been invalidated by cancer doctors so much, I don't know what to do. I do not want to fall through the cracks.

Any suggestions are appreciated. I feel I deserve a biopsy to test for amyloid. Where should I go?

Any IgA lambda patients out there.

Thank you sorry it's so long xo

[Ian]

Re: Need a specialist in IgA lambda & hypogammaglobulinemia

by Ian on Thu Feb 26, 2015 11:29 pm

Hello Janie,

I may be wrong, but I am not sure you will be able to find someone who focuses solely on IgA lambda and hypogammaglobulinemia. Instead, you probably will be in the best hands if you see someone who focuses on plasma cell disorders such as myeloma and its precursor diseases, including MGUS and smoldering myeloma. This kind of specialist will also have a great deal of knowledge in hematology, generally, so will have experience with hypo­gamma­globu­li­nemia.

You say that you have been to "several big name centers," without much luck. Can you tell us which ones, so that we know which ones not to recommend to you?

Also, can you share with us some of your key lab results, such as your immunoglobulin levels, serum free light chain levels and ratio, and perhaps some of your blood counts and mineral levels?

[Mister Dana]

Re: Need a specialist in IgA lambda & hypogammaglobulinemia

by Mister Dana on Fri Feb 27, 2015 2:07 pm

At the Mayo Clinic in Rochester, Minnesota, the hematology department has the names of about 40 doctors on the wall, and I was told that 15 of them are myeloma specialists.

In my experience, they do extensive blood and urine testing, and they are very efficient at running other tests like bone marrow biopsies and PET scans. They have a reputation for being up to on the latest research and taking on the most complicated cases. Highly recom­mended for both diagnosis and treatment.

[ldahle1]

Re: Need a specialist in IgA lambda & hypogammaglobulinemia

by ldahle1 on Sun May 24, 2015 12:23 am

HI Janie,

Fellow IgA Lambda here. I share the bilateral carpal tunnel, along with aching burning electric shocks and numbness. Asymptomatic my you know what!

I've been pursuing a possible amyloidosis diagnosis, but my doctor says unlikely, just ruling it out. Here is the conclusion I've come to, which may help you out.

Rule out amyloidosis with a bone marrow biopsy and fat pad aspiration. Do both to be sure. Next, request muscle biopsy to detect small fiber neuropathy. If no amyloidosis, treat the neuropathy with heat, massage, gentle stretching, and a big glass of wine.

Seriously though, you can drive yourself crazy waiting to get sick enough to get treatment. I am going to try to spend this time having as much fun as I can, instead of chasing down every rabbit hole looking for answers. Would love to hear about your results, and any treatment or remedy that helps your pain. I'll keep you posted on anything new on my end.

You're not alone, though God knows this is a club no one really wants to join.

Best of luck to you!